Sunday, September 28, 2008

The pool therapy really wasn't going all that well so I stopped going. I also had a problem trying to get on the schedule because I required more one on one time. I'd try to schedule at the end of my visit and be told that I'd get a phone call for scheduling because the therapist wanted to make sure she had time. I'd never receive a call and have to call back. I'd been forgotten about. I went in for the second visit, then the third (which was with a substitute therapist). I didn't schedule the fourth visit because the therapist was on vacation so I was told that I'd get a phone call. I never got a call and this time I didn't call in to remind them that I needed an appointment.

A few weeks after the last visit I had, I received a call from the therapist wondering why I hadn't been in. I explained that no one ever called to schedule. I even explained that I'd actually finally gotten a call from someone who was inquiring as to why I hadn't returned. I told her I explained that I was awaiting a phone call for scheduling but no one ever called. This person told me that someone would be calling me that day with an appointment. I told her that was alright because scheduling was just too difficult and since I had the pool at home, I'd just make sure to keep up on my own. The therapist then apologized for the lack of communication and scheduling, then she asked if I wanted to schedule an appointment then. I told her no, I'd continue working on my own.

Well, we've moved and there's no place to set-up a pool. The front yard is huge but there's spots for trees which makes it very difficult to actually find the right location for the pool. There's no back yard. That would work out great but it's just not an option. So, I haven't been participating in any pool activity since the last weekend in July. We moved that weekend.

As far as the smoking goes, I tried really hard to quit but it just didn't happen. I even used the patches but they didn't help either. Overall, I have cut back but I haven't stopped.

On the 19th, my dear friend Cindy invited me (as a gift of friendship) to a Janet Jackson concert. I went with her, on the 20th, and we had a blast. I'll post pictures when I get a chance. I was completed surprised and excited although I knew it would take a lot out of me, I can't just put my life on hold because I have all these symptoms that try to take over my body and life.

I had so much pain, and the glaring lights were blinding as lights always are for me, it was unbelievable but how many more times will I have a chance to see Janet Jackson in concert. Being there with a close friend was more than I could ask for. It was exciting, thrilling and all the other wonderful words in the dictionary. The performance was AWESOME and the outfits were absolutely adorable, each and every one of them. The choreography was totally amazing and made me think of my daughter often throughout the performance. Keonna loves to dance and choreograph dance moves. She actually teaches young children to dance as well. It was so very well put together and I'm so very thankful to have a friend think of me in this way.

It takes a lot for a friend to manage being able to take for an outing. It takes a true friend to even think of going through all the trouble with the wheelchair. You have assemble and dis-assemble it because it's electric, you also have to connect the batteries. Being electric means the chair is heavier than a manual one also. I appreciate that my friend didn't let the thought of all this trouble prevent her from thinking of taking me to this concert with her. She figured I'd really enjoy and felt that I also could use the outing. I was deeply touched. She even bought my favorite drink from Starbucks with her, to start the adventure out right.

It's been a week and I'm still in the recovery process but I also had my regular weekly outing on Tuesday. It's been rough because I never really recovered from the first outing before I took the second outing. This is the part that depresses me about just doing something as normal as going to a concert or going out to dinner with my husband. I just don't bounce back right away. It takes a few days to get the pain under control. The numbness becomes more pronounced because when I'm sitting (even now typing this blog), I experience a lot of tingling up and down my spine. When I go to lay down, the nighttime pain, tremors and sensations are become totally unmanageable and unbearable.

If you live a completely active free life without even the slightest reaching, twisting or activity, you might have a chance at having the symptoms to a lesser degree. The bottom line is that there really is no way of knowing. I rarely ever get out of the house and I spend a great deal of my time trying to keep my symptoms at bay because I just can't stand all the symptoms that happen throughout the day. Doing nothing is no guarantee that the symptoms won't flare-up to a degree where they are unmanageable. As I mentioned, I spend most of my time doing nothing but I still have excruciatingly bad flare-ups where I want to go to the ER but experience has taught me that all the ER does is provide a temporary time of relief. Once the effect of the injection wears off, you're still stuck with the same symptoms that led you there for a week, a few weeks, a month, or several months. You never know what you're going to get.

That said, when the rare occasion comes up that I'm able to have an enjoyable outing with family and/or friends, why turn it down. Enjoying an outing means you'll pay for it later but you'll pay for it later whether you're out enjoying life or sitting (or laying in the bed) at home. I'm only 45 years old and I refuse to live like a person on their deathbed, even if it feels like that most days. I'm not on my deathbed and I am here among the living and can enjoy a good time, just like everyone else.

I can be in pain and experience life with all these horrible symptoms from anywhere. No matter where I am or what I'm doing, these symptoms are a part of my life. I may as well enjoy some parts of life along the way. I can lay in bed and be in pain or spend time laughing with a friend while still being in pain. Distraction helps just like using a TENS unit or an icepack.

I'll be sure to post photos from the concert when I feel better up to all the functioning it will take.

Saturday, September 20, 2008

It's so amazing and intricate, the way SM works on the body. You never know from minute to minute, how you're going to feel. I am continually at a lose of the "no rhyme or reason" philosophy on how SM works. When you think you know why increases in symptoms occur, you find out, you're wrong. It's basically a disorder that does "what it wants, when it wants".

Thank GOD, I have been feeling a little better since Wednesday. I still have swelling on the right of my spine, and across the lower back. Overall, I'm beginning to feel less days of 8-10 pain, and more days of 7-8 level pain.

I find it rather strange that the body begins to accommodate all the suffering that's placed on it. I might think, I need to go to the ER. However, I know that all they really do is give you an injection and send you on your way. That's a huge price to pay for such a short-lived comfort effect. Once the effect of the injection wears off, you're still stuck with the overwhelming, excruciating pain that led you to the ER in the first place. It's very frustrating. I can sleep at home without paying hundreds of dollars for an injection to put me to sleep. The only difference being that the injection allows me to sleep peacefully without any recollection of the hours that passed.

That said, the body eventually adjusts to the abuse of increased pain and other symptoms. It's sad, but the pain, numbness, tingling, tremors, breathing difficulty, tinnitus and any symptoms I experience, are not life-threatening. Once the body adjusts to the abuse and stress being placed on it, you just learn to live with everything and move on. You find ways to live with them, maintain some sense of normalcy and a chance at a "new" normal way of living.

I have continued, over the last two years, to learn that I can and will, survive. It's truly such an amazing experience to go from crying and being in the fetal position in bed, to being up in the wheelchair with a smile on my face, going about my day.

The last few days have been livable and I certainly pray for livable days. Today, I can even deal with all the strange sensations going through my spine, all day long, with a dramatic increase when I lay down.

Sunday, September 14, 2008

My friend NL came to visit on Friday. She is such a wonderful person. She keeps me company until I need to lay down. We chat it up and just have the best time.

Well, she came bearing gifts from herself and another mutual friend. It felt like Christmas. Before she left, she helped me put everything away and placed the most gorgeous pink, luxurious robe (from the mutual friend) on the end of my bed. Gifts or no gifts, I truly enjoy time spent with friends.

Saturday, for some reason, I woke up with the worse pain in the back, that goes around to the chest, on the right side only. I have Dilaudid that I take for emergencies only but it's not helping at all. Not to mention, I'm still taking my regular medications. I should go to the ER but I'm so tired of the same routine. They give me an injection for pain, wait for it to take effect, then send me home. Once in a while, they might do an MRI and give me the status of my syrinx (if it's grown or shows no change).

Depending on the doctor in ER, they seem to take the lazy way out and just say the pain is from the syrinx. What if it's not? Simply giving me a shot and sending me home isn't finding the problem.

I can't even sleep through the night again. Although I still toss and turn in pain, since I've been on Lyrica, I just yell out from the intensity of the pain and then fall right back to sleep, once I change sides. Well, the last few nights, I haven't been able to just go right back to sleep. It's like a never ending nightmare.

Once I get into a, somewhat, comfortable position (in bed or in the wheelchair) if I move one inch, the pain is so excruciating that all I can do is yell out. It hurts to breathe in, talk or move. It came on so suddenly that I believe it could be related to the syrinx. That's normally how the SM symptoms present themselves, for me anyway. "All of a sudden a new symptom (or increase in existing symptoms) is there, no warning"!

I'll give it another day or so, if no better, I'll call the doctor's office and schedule an appointment. I'm just so sick of it all. It's a constant merry go round with SM symptoms, and with the doctors. When it gets this bad, I always say "I don't know how much more of this I can take". The bad part is that I am still having a problem with pain management, overall. So far, nothing has brought the pain level back down to the range between 5 - 7, so on top of this new type of pain, I'm still struggling with the pain level ranging between 7 - 9.

I know I can't give up and I will do whatever it takes to stay positive because I know that "this too shall pass". It's sad that all that really means is that I'll become adjusted to the level of pain I'm at. It's taking so long to get the pain under control that by the time the PM doctor gets it right, I'll have a new feeling of what level 10 feels like. I will survive by the Grace of GOD and lots of sleep.

Wednesday, September 10, 2008

I have been having an extremely difficult time with pain management over the last few months. My doctor increased the Oxycontin by 10mg's last month to see if that would help. Mickey told him that it helped a little but that I was still suffering a lot. I said pretty much the same thing but he's accustomed to asking Mickey if that's what he sees happening. We've been with him a year so he knows Mickey wants to chime in anyway.I told him that the 10mg helped a little but I really couldn't tell until I ran out of it. I only had 30 days but my appointment was after the 30 days. This gave me a chance to really see if it helped. As I said, it helped a little.

Thanks to Barbara, I then asked him about a neurostimulator vs a TENS unit. He said the neurostimulator went deeper into the nerve and stated that most insurance companies don't cover it, but he thought mine would. He will have the person he goes through get in touch with me but to be sure and ask about trying it out for a week, for free. This will give me a chance to see if it will really make a difference before he requests it through the insurance company.

I then explained that my pain has been ranging, throughout the day, from 7-9 when prior to the last few months we had it between 5-7. I asked him what other types of changes could be made. He wants me to try the neurostimulator but then he prescribed "Voltaren Gel". He said this is another medication that not many companies approve but that mine should. Regardless, he gave me several tubes of it to try for now, then told me to call the insurance and see if they will cover it. If I like it, of course.

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN**********************************

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

If you haven't viewed the link on "A Syrinx Photo", you should. I have posted the link below so others can see what a syrinx looks like in the spine and learn some interesting facts regarding symptoms. Keep in mind that a syrinx can present in several different shapes as well.http://neuromuscular.wustl.edu/spinal/syrinx.htm

Another interesting link relates to the do's and don'ts. Many ask the question of "What should or shouldn't I do?". The link is provided below.

Sunday, September 7, 2008

My days have been pretty regular lately, aside from the weakness which increases the tremors. I'm just taking one day at a time, as usual, and managing the best way I can.I've adjusted to the new house and all the strange noises that occur only when you're home alone. LOL!My daughter did visit for a short while yesterday in between getting new tires for her car. She'll probably come to visit in a few weeks and stay the weekend.Please keep Kira in your thoughts and prayers. She has been struggling with loss of sleep and extreme pain in her thigh.Take care and have a terrific weekend!

Monday, September 1, 2008

My holiday fun started on Saturday with a visit from my friend Hanh. It was an unexpected visit, but very welcomed. I was having one of the worse days possible when all of a sudden Hanh comes up to the door with a smiling face and flowers in hand. I probably talked her ears off but it was just great to see her during a day that started out very bad for me. I continuously used the icepack and TENS unit, throughout the day.

Hanh was very sweet in offering (ok, I nudged a little) to help out with the cleaning for the holiday party on Sunday. She did a terrific job in cleaning the kitchen and it was greatly appreciated. Unfortunately, she didn't make it over for the party, regardless I was thrilled to see her and happy to have something to focus on, besides the pain I was struggling through.

Sunday my son planned a holiday party and it turned out really nice. I had a lot of fun, once the horrible headache I had, calmed down. I was very sad most of the day thinking I wouldn't be able to attend the party, although it took time, I eventually attended for a little while. I chatted with everyone and was introduced with those I had not met before. Alcohol was served but I do not mix alcohol with my meds. It could be very dangerous for me and I'm not willing to jeopardize my life, so I had none. My feet were numb most of the day as well. This was new for me. I've had numbness on my leg and thigh, on the right side only. However, both feet were numb when I woke up Sunday morning.

My daughter came to visit and attend the party. She helped me (pretty much, I told her what to do) with the spaghetti and sauce, and Mickey helped me boil the ribs before he put them on the grill. Thank goodness I only had a few food items to attend to. One of the guys cooked the other items, boiled and grilled the chicken, while Mickey grilled everything else. I was taught as a pre-teen to boil chicken and ribs before grilling. Both can take forever to grill and have the tendency to be dry because they take so long to grill before they are done. By boiling them first, you limit the grilling time and the meat doesn't dry out. The other cook wasn't sure about the idea of boiling the chicken first, however, during the grilling process he mentioned that it was a terrific idea and that he'll be boiling his meats before grilling from now on.

The food, music and company was wonderful and the party lasted until approximately 10PM. I had planned to be in bed around 8PM but Cindy came to visit so I stayed up to enjoy company time with her. She made pink panties for the remaining folks and everyone commented on how good they were. Around 9:30 or so, I couldn't take anymore and told Cindy I was done for the night. Then I couldn't get to sleep until around midnight or so.

Of course, I used the TENS unit and icepack throughout the day. So far today has been the same with pain and other symptoms. The numbness still exists in my feet but not nearly as numb as they were on Saturday when I woke up and for most of that day. I'm still using the TENS unit and the icepack today. I use the TENS unit on a very low setting so that it basically feels like a light massage. I slept a lot up until around noon and I'll rest a lot as well, but I wouldn't trade a moment of fun time I had the entire weekend.

Between my daughter, Hanh and Cindy, I didn't have much time to focus on the pain or to be depressed. It was great and I am thankful to have had this special weekend.

About Me

I love to talk. I never thought I would survive not working or socializing. I had to make adjustments in my life but it can be done. I love nature, I can sit for hours and enjoy the surroundings outside. I love music and a good comedy. I enjoy spending time with my family, they are my lifeline. I try to visit the ASAP message board daily for support in dealing with illness and depression. I'm a strong person who can survive illness and depression with my family and GOD in my life.